National Advocacy Initiatives

How does advocating for CP research support make fiscal sense?

“We don’t understand a lot about cerebral palsy because there isn’t enough money. Many people are aware of autism and how widespread it is. Cerebral palsy is also quite widespread; it just doesn’t get a lot of research dollars and attention.” -Dr. Joshua Hyman, Associate Medical Director of the Weinberg Family CP Center

CEREBRAL PALSY IS THE MOST COMMON MOTOR DISABILITY AFFECTING CHILDREN and also has a very large adult population. Medical costs for Medicaid enrolled children with cerebral palsy are 10 TIMES higher than those enrolled without CP!

In 2003 the CDC estimated the lifetime cost to care for an individual with CP was approximately 1 million dollars (that’s 1.25 in 2015 dollars!) yet 2012 NIH CP research funding was only $52.50 per person living with CP. It also has been estimated by the CDC that the combined lifetime costs for all people with CP born in 2000 will total $11.5 billion in direct and indirect costs.

Despite advances in prenatal, delivery, and post-delivery care, the percentage of babies who develop the condition has remained the same over the past 30 years. As survival rates for very low birth weight baby’s increase, the risks for cerebral palsy also increase but continue to remain misunderstood because of lack of available research monies.

If money was directed toward CP research which looks into causation, prevention, and treatment, not only would we be addressing personal needs for people with CP and their families, but we would also working smarter to bring money to the front end of the issue!

The following “Dear Colleague Letter” from Senators Casey and Burr is currently being circulated around the Senate. It’s asking Senators to sign on to protect the NIH (National Institutes of Health) budget from spending cuts. The NIH budget directly feeds dollars into funding for CP research. The last day for Senators to sign this letter is Friday, April 26, 2013. Tell your Senators to sign the Casey-Burr letter!

Here is your Phone Dialogue Guide if you wish to call your Senator’s office. If your Senator has a Washington DC office be sure to call that number first.

Proposed legislation for the larger disability community:

“The ABLE Act”: This legislation introduced in 2012 would allow for families to establish special needs tax free spending accounts that as proposed are designed to protect your child’s access to many government benefits. Call your representatives and tell them you want them to support “The ABLE Act!

Comparative US Funding of Cerebral Palsy vs. Type 1 Diabetes:

What does this graphic say:

Cerebral Palsy Funding Facts:

There are approximately 800,000+ people who have CP in the US

We have no line item funding number that guarantees public monies will be directed toward CP research from the NIH or CDC. Over the last few years NIH money that was categorized as part of CP research was between 19-23 million dollars. This year that figured doubled with the addition of 20 million dollars allocated for one study (more on that later). Still, we have no guarantees and our funding numbers still pale in comparison. Furthermore, the categorization of research monies allocated for each category (disease, disorder, etc) occurs after the budget has been spent.

According to JDRF there are 3 million people in the US with Type 1 Diabetes.

Type 1 Diabetes has secured line item funding (Cerebral Palsy HAS NOT!) which makes their minimum PUBLIC resource pool for research monies at least 150 million per year (source NIH).

According to the JDRF annual report for 2012 they pulled in 123.9 million in private money for research alone. This is in addition to the 150 million per year that is allocated in public funds.

According to GuideStar and the 990s submitted for the following non-profits who focus their efforts solely on the CP community, the total amount of private money raised for CP was less than 2 million dollars.

-Cerebral Palsy International Research Foundation

-Reaching for the Stars

-Pedaling with Pete

-Let’s Cure CP

The total amount of money JDRF raised in the state of Maryland alone last year was *$1.7 million dollars and similar to the total NATIONAL amounts raised by our US CP organizations. Sure, there are more people living with Type 1 Diabetes but the ration of funding isn’t nearly equivalent.

*Verified verbally by the Development Director of the JDRF Maryland Chapter since 990s for JDRF lump all chapters together.

Call your legislators and educate them about the need for funding for Cerebral Palsy!

What is line item funding? Line item funding is an amount stated in the Congressional Budget and overseen by the Congressional Appropriations Committees that allocates specific money for a specific purpose. In this case we would be requesting guaranteed funding for the CDC and NIH for CP research that looks at the cause and treatment of cerebral palsy.

If you live in the US you often hear people suggest that you contact your local Congressmen to let them know about your point of view when they vote on legislation. But do you know who they are? Here is a handy tool for finding your local representatives so that you can stay active in sharing your voice: http://www.house.gov/representatives/find/. Here is another resource for finding your state Senators: http://www.govtrack.us/congress/members. Ask your congress person to support CP research!